Archive for July 2010

So I’ll begin where I left off, with the graham crackers. For those of you reading from across the pond, the closest match I can come up with for a graham cracker is a digestive biscuit, with a bit of honey and cinnamon. You can just eat them as they are, but they are often used in desserts like key lime pie, which tastes like my honeymoon. They are famously (well, in America) used to make s’mores. S’mores are a graham cracker sandwich of toasted (preferably on a camp fire) marshmallow and chocolate. They are delicious, or s’moreish as I like to say. Eating s’mores is one of those quintessentially things you do as an American kid. Pudding’s preschool autism class is doing a camping theme, with s’mores. And if I lived an ordinary life, that would be the end of it.

Pudding is allergic, sensitive, or intolerant to gluten, dairy, potatoes, rice, carrots, beef, green beans, eggs, fish, cashews and peanuts. We are new to this discovery, and there are likely to be more foods she can’t eat. All the stuff you can buy that is gluten free has dairy, or rice, or potatoes in. So you can’t buy ANYTHING that is pre-made and you have to make EVERYTHING from scratch. When I say “you” I just mean me, of course, because I’m yet to encounter anyone with a kid with this many food allergies, though I’m sure such souls do exist.

Maybe one day I’ll get around to telling you about there being a sizable sub-section of the ASD population with food allergies/sensitivities/intolerances, and that a diet removing the proteins in wheat and milk has been helpful for some children. How there is a whole industry springing up around this, for better or for worse. How I think all these allergies are created by the food industry. I’ll get around to telling you about what we found with Pudding, but it is an ongoing saga, and I really need to stick to those damn graham crackers.

I know you’re probably wondering why I don’t just give her something else to take to school instead. I could, of course. She may not notice, she probably wouldn’t even care if she did. She seems to like her graham crackers without the chocolate and marshmallows spoiling them, so not having s’mores is not going to be a big deal for her. So many things are a big deal for her, so many things are going on right now, that it seems ridiculous that I would consciously create my own big deal. That is exactly what I did yesterday.

So, why? Well, part of it is because I have a little bit of guilt that we live our nomadic lifestyle. That our kids don’t get to have the same experiences as other kids. Don’t get me wrong, they’ll have other, amazing experiences, but they often seem to miss out on the more mundane things. We just have one year left of being a (half) American girl living in the USA.

Secondly, in a world where she and her school friends are the odd ones out, I don’t want her to be left out. I too had allergies as a kid, and remember being banished from the cafeteria when the offending food was served. Clearly her beloved teacher Ms. S is not about to banish her, but being marginalized in a special ed class is the kind of thing they write country songs about.

Thirdly, during my extensive web-based research (really, I need a doctorate for all my studying this last year) I came across an alarming link between anorexia nervosa and girls with Asperger’s Syndrome. I know, I know, that I’m worrying about that too early for a girl who has always been over 95th percentile on the growth charts, but I can’t remove these pieces of information once they get in my brain and they twist and turn themselves around until they become legitimate fears. We’re starting to see more control and choosiness over her food that may be a result of the restrictive diet and those stupid allergies.

I thought I’d turn it into one of those fun, crafty-do-it-together things that are fine for other people, but quickly degenerate over here. I’d bought some teeny-tiny animal cutters that were adorable, but impossible to use. So Pudding used a gingerbread man cutter, and I used the animal cutters. Next came what we take as conversation, but others might be more inclined to call monologuing (yes, that is a word, it was in The Incredibles).

The hospital where Pudding was diagnosed recently sent out a request that parents whose children were diagnosed there write a letter to other parents of children who are just now going through the process. I don’t know if they will get to use my letter, as we have to keep anonymous. However, the internet has a magic way of getting a message where it is needed. It did it for me a year ago, and now I want to pay it forward. Here is my letter:

I once had a conversation with a friend, who is gay, about Coming Out. He explained that coming out is a big deal, you build up to it, it takes all your nerve, you finally do it and feel an enormous sense of relief. Then it dawns on you that you just came out to a few people, and there are about 6 billion more on this planet. You have to keep doing it, over and over again every time you meet someone new. And every time you worry about how they are going to deal with this information. How will it change they way you are perceived? Are they even worth sharing this personal information with?

Almost exactly a year ago, we started to notice Pudding’s differences. We were scared and confused; overwhelmed by the A-word. We had to acknowledge that our visions of her future did not belong to her, and it was okay to let go of them. She was the same little girl she always had been; that is to say, a little different. Still, it was hard to tell friends and family. We knew our parents would feel that same fear for her future. We hated that awkward silence when we told friends. It gets easier, though, and the more we feel comfortable about talking, the more questions people are asking. Questions are easier to deal with than silence. Questions lead to understanding. Silence leads to shame.

There is another way. Pudding’s disability is invisible. We could keep quiet, hide her secret. Unfortunately, secrets imply shame, and shame leads to stigma. We don’t ever want her to feel ashamed about who she is. We want to take these diagnostic words and demystify them. To learn about the community of “Aspies” and “Auties” who not only aren’t ashamed of who they are, but take pride in their differences, and their contributions to this world. We are determined that Pudding and Cubby will grow up taking pride in who they are, whoever they turn out to be. It will be difficult. As they get older they may not choose to be open, and that will be their choice. It is our job to make sure they feel confident and strong enough to make that choice.

I’m thinking about this because on Friday Pudding will have a play date with a new friend. I’ve been corresponding with the mother over email, but I haven’t mentioned that Pudding has autism. Do I let her know before we meet so that she is prepared? Or do I let her and her daughter meet Pudding first, so they can see there is more to her than a diagnosis? I’m not sure what to do. Even spectrummy mummies don’t know everything! Suggestions in the comments please.

I have always loved words. From an early age I developed a voracious appetite for reading. I love Scrabble, and crosswords, playing around with words. I love a good pun. So it shouldn’t come as a surprise that Pudding likes words too, as difficult as they are to come to her at times. As with everything though, she puts her own atypical spin on things. I love her humorous, absurd uses of language. I can’t wait to see who she is going to be, this exceptional child. As a word-lover, I delight in all these language differences. As a spectrummy mummy my job is to correct, normalize the dysfunction.

Here are some of Pudding’s words. Sometimes they leave me lost for words.

When your child is typically developing, you see progress in steps. Your little one moves incrementally forward, passing the developmental milestones. And while there might be a couple of steps backwards at stressful times, and jumps forward at others, usually you can count on a steady pace in the right direction.

For spectrummy kids, this isn’t usually the case. When we think of autism, we think of the monster that is Regression. Regression doesn’t push your child down a step or two. Regression clings on to your little one and pulls so hard that somehow you are 18 or 19 steps backwards. As a parent you can only watch in horror. You can’t fight this monster. And all the hard work your baby has put in, so, so much harder for her than others, is gone. You think about what a waste of time and effort all those occupational therapy and speech therapy sessions were. You hate that life has to be so much harder for her.

Then there is Progress. She is a visitor who never overstays her welcome. A sprite you try to capture, who flies away before you can grab hold. But somehow that sprite has left a magical gift. And it is never a step forward, but a leap. And you can’t fathom how that leap happened, but you don’t think about it too much. You just delight, and tell everyone. Everyone. That was your kid who attracted the attention of the waiter (okay, manager, but who can tell the difference?) and requested another drink. And you don’t care that her friend did that two years ago. It is our Progress, don’t take it away from us. She has to visit someone else, but she’ll be back. We’ll be waiting, ready to move forward again.

When you see your friends, they’ll ask a deceptively simple question about how you are doing, and you always answer “fine”. You have no idea how to put this into words. There are highs and lows that other people never experience. We are running our own race. It is chaotic and challenging, exhilarating and exhausting. We just put one foot in front of the other, because we know no other way to make those steps.

Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week. Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge. Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.